Constant nerve issues - many months out

[[dj...]]

Hey there, I’m 21.5 months out from last dose and my worst symptom now is nonstop nerve issues.  I don’t know how to describe them other than very universal prickling, tingling, clinching, pressure, squeezing type sensations.  I cycle through all those.  Every day it’s a different one.  It really affects my entire body but I feel it most in my back, neck, back of legs and the part of my head sort of around the ears (back of head and face).  It’s not terribly painful most of the time but it’s very weird and uncomfortable.  Feels like my body isn’t my own.  

Like imagine one day you wear clothes that are two sizes too small.  It’s going to get annoying and uncomfortable.  Then the next day you feel like your skin is covered in jelly.  And maybe the next day my body feels slightly electrified.  Just all sorts of crazy stuff. 
 

Do I just chalk this up to benzo-related nerve flare-ups?  General nerve inflammation?  Never had before getting off benzos. Went to neurologist and had a work up and nerve conduction study done and everything came back normal.  
 

 

[[pi...]]

Hello @[dj...],

Nerve and muscle issues were my longest lasting symptoms. It was frustrating to wake up every day with the usual culprits showing up. However, with time it did ease up and finally go away. There was no sudden departure and frankly I had a huge wave right before healing that sent me to the doctor for a plethora of tests. 

If the tests didn’t show anything abnormal and you didn’t have this before benzos, then it will go away. The sad thing is there is no way to predict when. For me, it was well worth the wait.

[[dj...]]

How long did this last for you?

This has been a problem for me the whole time but it went to another level at 14 months and then into absolute overdrive at 20 months.  Past 7 weeks have been utterly horrific with this.  Hopefully it’s a last surge before it fades. 

[[pi...]]

My recovery happened at about 15-16 months. We all heal at different rates though so it’s not possible to compare recovery times. I also hope this is the last big wave for you. 

[[WU...]]

2 hours ago, [[d...] said:

Do I just chalk this up to benzo-related nerve flare-ups?  

Has to be, doesn't it?  I'm at 16 and a half months and its more painful and uncomfortable than ever.  Keep thinking it must be a final surge it is so bad, but I've been saying this now for a couple of months.  Does yours hurt more if you do more activity or is it just as bad if you do nothing? 

[[dj...]]

38 minutes ago, [[p...] said:

My recovery happened at about 5-16 months. We all heal at different rates though so it’s not possible to compare recovery times. I also hope this is the last big wave for you. 

I know.  I was just curious.  
 

I would be so much better if this problem would go away.  It’s highly correlated with my general well-being and mental health (like regular mental health - not benzo related).  For the most part, my benzo induced mental symptoms have gotten a lot better, but my overall mental health has declined because I’m so physically limited.  Can’t do much without this stuff going crazy.

[[dj...]]

11 minutes ago, [[W...] said:

Has to be, doesn't it?  I'm at 16 and a half months and its more painful and uncomfortable than ever.  Keep thinking it must be a final surge it is so bad, but I've been saying this now for a couple of months.  Does yours hurt more if you do more activity or is it just as bad if you do nothing? 

Oh it ramps up a lot more with activity.  It really doesn’t take much.  Can’t exercise.  Going to Target, taking my kids to the pool, just standing for long periods of time 5+ min).  Can all rev it up a lot.  Sustained activity is rough.  But I’ve got kids to take care of part of the time.  I can’t sit on my butt all day every day.   
 

Doing nothing helps it calm down for sure but it never goes away.  I’ve been saying the same thing about this being the final surge, but it is so ridiculous now I can’t help but think that this is possibly it.  I also say that given general timeline.   Even the people that deal with this for years seem to turn a corner around the two year mark and I’m almost there. 
 

 

Edited July 22 by [dj...]

[[WU...]]

Well you are doing a lot more than I am with children part-time and going to big grocery stores, but then I don't have to do much except basic stuff around the house and garden and get my groceries delivered, always disliked shopping anyway.

Our bodies are constantly changing and responding to information we feed into it so this is not going to be a static situation. I am also looking at the psychological side of withdrawal and recovery and how it is important not to feed fear into this process. So I say things to my brain like "oh you are being really noisy today" when it comes to screaming tinnitus and " brain, do you really have to produce this level of pain, surely you can repair things without going overboard about it? " So far this strategy appears to have ramped things up even further ! Oh dear.

But I am not going to stop thinking psychologically as I do not want my brain to habituate to this level of pain, absolutely ridiculous what the brain is capable of. Even people who have never taken these drugs can suffer from similar levels of pain when there is nothing at all structurally wrong with them.

It does seem like we should have all this done and dusted within 2 years give or take, so I am allowing my brain that amount of time to fix things but planning ahead by looking into the psychological aspects.

There is an interesting video on YT from Gustav f called "A Mindbody Approach to Psychiatric Drug Withdrawal | Protracted Withdrawal Syndrome" His symptoms went on for 5 years until he found out about the MindBody connection. Its quite arty with film clips and very well put together. 

We are still within the 2 year period so I wouldn't be too concerned at the moment but I'm trying to get one step ahead of the brain in case it wants to trick me into dragging this out any longer than is reasonable.

[[dj...]]

I don’t get too psychologically rattled by symptoms anymore.  Just let them come.  I actually stopped going to Target and the grocery store for the most part.  I do pickup most the time now unless it’s a smaller store and I just need a few things and can be in and out really quick (like Trader Joe’s). 
 

I‘m also not sure I believe in tricking your mind into healing.  That’s the quickest way to insanity.  The mind can be tricked into developing good habits and working itself out of depression/anxiety, but that requires functional GABA receptors and neurotransmitter symptoms.  The mind can’t trick a broken leg into healing.  You can strengthen muscles and the rest of the body around the broken leg so you’re capable of more once it heals.  All these positive feedback loops are nonsense when it comes to this.  It’s literally about GABA receptors sort of turning back on.  Trying to fix this will drive you mad.  I know. 

Edited July 22 by [dj...]

[[Le...]]

1 hour ago, [[d...] said:

Oh it ramps up a lot more with activity.  It really doesn’t take much.  Can’t exercise.  Going to Target, taking my kids to the pool, just standing for long periods of time 5+ min).  Can all rev it up a lot.  Sustained activity is rough.  But I’ve got kids to take care of part of the time.  I can’t sit on my butt all day every day.   
 

Doing nothing helps it calm down for sure but it never goes away.  I’ve been saying the same thing about this being the final surge, but it is so ridiculous now I can’t help but think that this is possibly it.  I also say that given general timeline.   Even the people that deal with this for years seem to turn a corner around the two year mark and I’m almost there. 
 

Have you ever pushed yourself for any extended time(weeks) to be highly active despite the initial increased reaction?

[[dj...]]

3 minutes ago, [[L...] said:

Have you ever pushed yourself for any extended time(weeks) to be highly active despite the initial increased reaction?

I have pushed myself countless times taking care of my kids and it ALWAYS ends poorly.  The quickest way to send me to the hospital is to do what you’re suggesting. 

Edited July 22 by [dj...]

[[Le...]]

ever walk briskly 60+ min per day for a month or anything like that?  

[[WU...]]

8 minutes ago, [[d...] said:

It’s literally about GABA receptors sort of turning back on

Absolutely I agree that is true in our case.  I'm talking about if it goes beyond 2 years give or take. It is not about tricking the brain into healing but about the brain/mind tricking us into not healing by habituating the symptoms. 

[[dj...]]

2 minutes ago, [[L...] said:

ever walk briskly 60+ min per day for a month or anything like that?  

That would literally send me to the hospital in unbearable pain.  
 

This is my third (and final) major attempt in the past 5 years to get off benzos. I reinstated twice largely due to stress from marriage (which ended).  Each successive attempt the symptoms have gotten much worse.  All that to say that there are infinite varying degrees of benzo damage.  I could make the same list of 20 symptoms as I could have made 4 years ago but except one is 20x worse than the other.  What I’ve found is the worse you get hit by this, the more sensitive you are to EVERYTHING, and things that once helped you become your enemy.  Like walks.  My first attempt off I could walk just fine and it was actually helpful.  My second attempt walking for 15-20 minutes was helpful but 30-40 minutes became too much. This attempt walking for even 5 minutes will kill me. 
 

Have to figure out what works for you.  All the standard rules of health and well-being are thrown out the door. 

[[dj...]]

15 minutes ago, [[W...] said:

Absolutely I agree that is true in our case.  I'm talking about if it goes beyond 2 years give or take. It is not about tricking the brain into healing but about the brain/mind tricking us into not healing by habituating the symptoms. 

I see what you’re saying but I’m still skeptical of that.  Healing comes in time.  There are things that are psychological and things that are neurological.  True BIND or benzo injuries are a neurological phenomenon.  You don’t see many people trying to cure Parkinson’s and Multiple Sclerosis psychologically do you?  Although we may not have any structural damage, there is a deep, chemical process that has gone wrong.  
 

I talk to a guy every day who was crushed for 30 months straight and then things started clicking back in place.  People have literally healed overnight from this after dealing with many, many months of crushing symptoms.  The brain essentially has to turn the lights back on.  One of the most dangerous things in this is thinking you can fix it - that’s how people drive themselves crazy and end up back on benzos are on Gabapentin or something.  

Edited July 22 by [dj...]

[[WU...]]

17 minutes ago, [[d...] said:

that’s how people drive themselves crazy and end up back on benzos are on Gabapentin or something.  

What would be really crazy is to ever take one of these pills again. Not gonna happen.

I guess we wait patiently. Awful it takes some of us so long. I'll keep an open mind about how all this stuff works, GABA etc. and no doubt a whole load of other things need to fall into place before all the lights come back on

[[dj...]]

1 hour ago, [[W...] said:

What would be really crazy is to ever take one of these pills again. Not gonna happen.

I guess we wait patiently. Awful it takes some of us so long. I'll keep an open mind about how all this stuff works, GABA etc. and no doubt a whole load of other things need to fall into place before all the lights come back on

Seeing therapists and psychiatrists who told me I had to harness the power of my mind and work my way out of this was how I ended up back on benzos.  The benzos would help calm my mind and develops positive neuropathways apparently.  That was a disaster.  It’s amazing the gaslighting that took place chalking everything up to an anxiety disorder that seemingly appeared overnight at 40 years old.  And I didn’t find BB until later.  My first attempt to get off this was like 97% psychiatric symptoms though, just insanely exaggerated ones.  Once things started getting a lot more physical, there was far less doubt.  

[[WU...]]

14 hours ago, [[d...] said:

Seeing therapists and psychiatrists who told me I had to harness the power of my mind and work my way out of this was how I ended up back on benzos.  The benzos would help calm my mind and develops positive neuropathways apparently.

The mind is powerful but for psychiatrists to think it would work as effectively with benzos is ludicrous. The benzos basically hijack our minds!  I've never seen a psychiatrist only GP's and muskuloskeletal consultants and they seem to think by "breaking the cycle" of pain with benzos it would stop the brain from pumping out pain. Of course we trust their knowledge and now 25 years later, ha ha... it is almost funny.

I agree it is not an "anxiety disorder" but a messed up chemical process from the drugs. This physical stuff is just breathtakingly excruciating, not like any pain I've ever known before. Movement doesn't change it in any way, the pain does its own thing regardless.

 

 

[[dj...]]

3 hours ago, [[W...] said:

The mind is powerful but for psychiatrists to think it would work as effectively with benzos is ludicrous. The benzos basically hijack our minds!  I've never seen a psychiatrist only GP's and muskuloskeletal consultants and they seem to think by "breaking the cycle" of pain with benzos it would stop the brain from pumping out pain. Of course we trust their knowledge and now 25 years later, ha ha... it is almost funny.

I agree it is not an "anxiety disorder" but a messed up chemical process from the drugs. This physical stuff is just breathtakingly excruciating, not like any pain I've ever known before. Movement doesn't change it in any way, the pain does its own thing regardless.

My pain is a mix of both.  I can absolutely make it worse with increased activity, but it also does its own thing.  I can sit on my ass for the most part for two weeks and some days will be much better or worse than others for no reason.  
 

What really gets me is when I have trended downward with a physical wave and then add a bunch of activity on top.  That’s where I am this morning.  I am so weak and in so much pain.  But, I could also wake up tomorrow and be 100x better.  Lots of randomness.   

[[dj...]]

3 hours ago, [[W...] said:

The mind is powerful but for psychiatrists to think it would work as effectively with benzos is ludicrous. The benzos basically hijack our minds!  I've never seen a psychiatrist only GP's and muskuloskeletal consultants and they seem to think by "breaking the cycle" of pain with benzos it would stop the brain from pumping out pain. Of course we trust their knowledge and now 25 years later, ha ha... it is almost funny.

I agree it is not an "anxiety disorder" but a messed up chemical process from the drugs. This physical stuff is just breathtakingly excruciating, not like any pain I've ever known before. Movement doesn't change it in any way, the pain does its own thing regardless.

Also, lol at that “breaking the cycle” comment.  Opioids can break the cycle too and also make pain worse in the long run.  MDMA and cocaine can also break the cycle of depression lol.

The lies the world of medicine has told itself are deep.  

[[WU...]]

1 hour ago, [[d...] said:

What really gets me is when I have trended downward with a physical wave and then add a bunch of activity on top.  That’s where I am this morning.  I am so weak and in so much pain.  But, I could also wake up tomorrow and be 100x better.  Lots of randomness.

And yet we are told our glutamate levels are way too high with gaba receptors offline and that exercise and increased activity will reduce glutamate levels, but in my experience this is not the case, just makes things even worse, muscles tighten even further like they are going to snap! Clearly some people here do benefit from exercise. I wish we knew why there is this massive difference.

On another matter I would like to see a study of how many psychiatrists, GP's and other medical staff are taking benzos and AD's themselves and compare with how many pharmaceutical company staff are taking them, which ones, how many and duration. Would be an interesting study I think.

[[dj...]]

1 hour ago, [[W...] said:

And yet we are told our glutamate levels are way too high with gaba receptors offline and that exercise and increased activity will reduce glutamate levels, but in my experience this is not the case, just makes things even worse, muscles tighten even further like they are going to snap! Clearly some people here do benefit from exercise. I wish we knew why there is this massive difference.

On another matter I would like to see a study of how many psychiatrists, GP's and other medical staff are taking benzos and AD's themselves and compare with how many pharmaceutical company staff are taking them, which ones, how many and duration. Would be an interesting study I think.

Well, I have a theory on your first paragraph there seeing how I have had three separate, major attempts to be done with this crap.  
 

Benzo damage is not created equal.  Some people here have it 100x worse than others, however, they may both report the same symptoms and seem equally as affected by it…on paper.  Need to look at true functionality.  I think the people who get hit harder are more likely to be adversely affected by exercise, supplements, medications, diet, etc.  The people who get hit less hard may still be dealing with awful, life-altering symptoms, but the intensity and impact on their lives may be a 1.5 on a 10 point scale compared to other people.  I’ve been both ends of that scale in my several attempts.  
 

I’ve been where exercise helps.  I’ve been where it absolutely ruins me.  The worse you have it, the more sensitive your nervous system becomes and is less likely to react positively with the normal benefits.  

Edited July 23 by [dj...]

[[WU...]]

1 hour ago, [[d...] said:

Benzo damage is not created equal

yes so many variables and kindling is the worst which is what happened to me. Imagine how many times the brain has had to adjust each time we take a pill and then erratically stopping and starting again. Not to mention any other meds and how they interact, different metabolisms, lifestyles, fitness, stress, age etc. No wonder there is no set pattern or time for healing.